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December 6th, 2019

Julia's sleep schedule is all over the place with the latest sedation, as expected. And not all of it has been super restful, so she's been extra grouchy today. Her vitals are all decent as long as she's not being moved, but as soon as she's moved, for any reason, she's very unhappy. Luckily she settles down quickly, and is content again holding hands or playing with her iPad.

She got a blood transfusion this morning because her hemoglobin is dropping a bit (was 6.9 this morning / they like to see 7 or 8 depending on patient). Her white cells are also a bit low. The hope is that holding the one oral chemo this week, as scheduled, is enough to bring them back up (as it is assumed to be the cause), but if they don't rise on their own, they will need to consider pausing the other two meds as well. That decision will be made next week depending on what her followup labs look like.

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Results of PET/CT scan reveal no cancer anywhere else (yay!). That doesn't make her situation any better, but it also doesn't make it worse. So I guess that's a victory. The PET scan showed increased activity around her brain stem and upper spine, and around her right lung, as expected. Nerve pain meds, which could be upped a bit, should handle the spine/bran membrane pain, and we can look into a better cocktail for handling the possible pain from inflammation near her right lung. Tylenol + Morphine is a pretty good combo. Oxycodone might provide extra comfort. We'll discuss changes to her pain management next week, but so far the current combo seems to knock out discomfort pretty quickly (again, as long as she isn't being moved).

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She has slept literally all day, so no cute video. But I did add a picture of 1-week-old Christmas Julia to the update, and Gabriel putting on "gunkle's" shoes and hat ❤ Also, when I called Aunt Charlene to give her the PET scan results, Gabriel literally rapped "Jesus Loves Me" in the background for the entire phone call. Really trying to get that recorded... but he stops as soon as a camera is pointed at him.